NOVEMBER 15, 2008 - Friday's clinic visit brought more good news. So far he's doing very well off his IV medicine. His appetite seems to have decreased a bit but he's also sleeping more so we're not sure if it's the changes in his medicine that could cause it. The nutritionist wants us to hit at least 20 oz of Pediasure / Lactaid Milk a day and they want him to stay above a certain weight. If he doesn't, they'll look into alternatives.

They have taken him off of one of his three-times-a-day medicines but they added a one-a-day multivitamin to make up what he's not getting through his TPN. They are also planning on stopping his steroids on Monday. They would have done it on Friday but the doctor noticed a rash that they want to keep an eye on. They gave us cream to put on his body for the weekend. If the rash is gone by Monday they'll take him off the steroids.

Wednesay is his 100th day post-transplant so he'll go in for a bunch of tests. Two of the tests are very important to us. One is that they're going to check again to see how many of his cells are donor cells, which should be available the week after that Wednesday. The other is the enzyme test to see if he's making the enzyme that he was originally missing. That will take two weeks, so hopefully we'll have the results by December 3.

And best of all, they have finally set a tentative date for him to go back to Michigan. The date they're planning on is December 12. Our doctor has also found a doctor that we believe is located at Devos Children's Hospital at Spectrum Health, so he wouldn't have to travel far for his checkups in Michigan. And at the moment, we're looking into apartments on Alpine Ave.

Again, the date is still tentative and can change if he runs into any bumps in the road so we're not getting our hopes up too much because we're ready to get back to Michigan but it'll be nice if we can get back before the holidays.